Monday, June 20, 2011

Fight 4 Lupus: Why Does This Have To Hurt So Bad?

Fight 4 Lupus: Why Does This Have To Hurt So Bad?

Why Does This Have To Hurt So Bad?

Everyone who has lupus deals with the pain one way or another. Whether it be in your joints, muscle and various other places. The only way I can describe it is the pain is dull and intense. It is like your whole body is on fire. There is a a lot of ways to relief the pain, but are they good for you?  Doctors tell you that if you have inflammation take an anti-inflammatory like Ibuprofen or Aleve.  These pills are supposed to help, but your pain is really intense and the anti- inflammatory  doesn't work how do you deal with that?  What I usually do is take a really hot bath, but unfortunately that only lasts for a certain amount of time. I usually take a Tylenol PM because it helps me sleep and I don't feel pain in the morning. Now I am not trying to suggest that you use it, but whatever you use to help relieve the pain that you are feeling by all means take something. There is no reason to live uncomfortably with this disease.   Some might say that they don't want to be addicted to the pain medication. That is okay. Personally I just don't like being in pain. I respect those that can deal with having lupus, but for those who can't deal with the medication and the side effects my heart goes out to you . There is no easy way to really live with this disease. There are those who say suck it up and get over it, but that is easier said then done. There has been days when I just lie in bed, because I don't feel good. Yesterday I went on a hike and got over heated so my hubby poured water all over me.  Luckily there was a breeze so it felt awesome and I cooled down immediately. Yes I had sunscreen on my arms and I was wearing a hat. I try not to go out in the sun that much because if I do I get really nauseous.I really would like some feedback from people who read my blog. I know that this disease is different with anybody who has it. If there is a topic that you want me to write about I would really like it if people would comment.  Give me some idea on how you are feeling!!!!

Sunday, June 12, 2011

Lupus and Positivity

When I go on Facebook and I read people's stories about their personal  battle with lupus.  It really touches my heart to read about the trials and tribulations in dealing with lupus and how it has affected them and their families.
They really inspire me to fight with them. I know what it is like to look in the mirror and just stare at my scarred face and think " God I am ugly".  I remember when my face had discoid lesions that were pretty fresh and some jerk had the audacity to ask me if I scraped my face on the on the ground.  I was so hurt by it and I remember thinking at the time " Who the*  blank* do you think you are ?
Man, did that piss me off.  It was even worse when I had to go out in the public. I couldn't even look in the mirror. Then after awhile something finally clicked and I realized that the scars are a part of who I am and they don't define who I  am on the inside. It was difficult to accept it, but when I finally did it was a revelation and a relief to accept who I am scars and flaws included. I got tired of crying about ,because really what is that going to accomplish. Don't get me wrong when you have lupus you are not thinking about how great life is and how things are fine and dandy. They really aren't that great. So how do you rise above it? I believe in prayer and healing.. I know that we don't feel good and it hurts. Use that pain and discomfort for the greater good. Don't be afraid to say " Hey I don't feel well can you help me?"  Never be  to proud to accept the help. Honestly the people who have this disease are the ones who really know how they are feeling. People need to understand this that we are capable doing only what our bodies will allow us to do. I am a strong believer in
" Life is what you make of it".  To all the people who have read my blogs thank you . Keep strong and get the support that you need whether it is from friends or families. Let people know that lupus is real and fight to find a cure. I refuse to give up on those who need a helping hand or a shoulder to cry on when they are in pain. Whoever you may be and however long you have been living with this disease you are beautiful inside and out.

Thursday, June 9, 2011

Having Lupus and What It Means To Be A Survivor

The definition of a survivor is a person who continues to function or prosper in spite of  opposition, hardship, or setback. Everyone has a story to tell and everyone has survived one way or another. Well I am going to share another part of my life with  you. Just as the Vietnam War was ending another uprising was starting. If you have ever seen the movie "The Killing Fields" that movie will give you an idea about what I was being born as a Cambodian. It was a time of sorrow and pain.  Thousands of people died as a result of one person who was basically an evil dictator. Most would say that he was a Asian version of Hitler. His name was Pol Pot. He had a regime that was called the Khmer Rouge (his army) and whoever didn't follow him were killed. He had ordered landmines that were placed in the fields and anyone who stepped on it was killed instantly others lost more than just their dignity they lost there limbs . I only have bits and pieces of stories that may have or have not happened to my biological parents. According to the information that my adoptive parents were given when they adopted me my biological parents were killed in a rocket attack and judging from a shrapnel scar on the back of my leg and  I believe that my mother was holding me when she died. I was 9 or 10 months old when I was adopted. I was one of many babies and children who were orphaned in the massacre .There was a wealthy gentlemen who wanted to help. He had sent a few commercial airplanes for the orphaned children and babies The called it "Operation Baby Lift"  Over 3,000 children were rescued one of the planes that was caring the orphans actually didn't even make it off the ground it crashed into a rice paddy.  That particular plane was carrying 350 people on it and only 154 survived.

When I was a baby my prognosis of my developmental abilities were slow. I was malnourished and very sick.  My birthday isn't really my birthday at all it was given to me. I spent most of my life wondering what my mother was like or if I had any family that was still alive. I would love to visit Cambodia one day, because it really is a beautiful place. When I was 10 years old I had a grand mal seizure and it was so bad that I was put into a drug induced coma. Then 6 years later to the day I was diagnosed with lupus.  I had my lupus under control and was afraid to even have kids and I really didn't know if I could have kids.  Well I had 2 beautiful daughter's  and then in the summer of  '97 is when I had a flare up and almost died.  All the things that I have gone through I went through for a reason.  For the longest time I didn't know what do to do with the burdens that I was carrying.  I fought my hardest to stay healthy so I could watch my girl's become young ladies and eventually watch them get married and have children of there own.  Having survived all those things in my life have helped me a better person, a better mother, and a better wife. My family is what I am inspired by.
  I know that for some people it is not always easy for them to live with lupus and be happy about there situation whatever it may be. Honestly I don't know when and if I will  have another really bad flare up. What I do know is that I think I was born to survive. My wish is to reach out to others who are suffering. There is always a light of this tunnel.

Thursday, June 2, 2011

Lupus and Your Immune System

Everybody has different immune systems and people with lupus know whenever flu or cold season comes around.  You should stock up on vitamin C  and get plenty of rest. While everyone else's immune system is fighting off viruses people who have lupus generally have a difficult time fighting off those viruses. Our immune systems much more complex then that of a healthy person. I know when my body is working overtime, because when  I get sick  my body is fighting that much harder. Depending on whether or not my immune system hasn't been compromised I am able to fight off the virus, but if I am having a flare up I usually end up with pneumonia or a upper respiratory  infection. Whenever that happens I end up in the hospital for a couple of days. The weird thing is that whenever I have my blood taken either the doctor's don't  really know what to look for where lupus is concerned, because they end up telling me that it isn't the lupus. I am sure if you are someone who has lupus you are probably thinking to yourself  "All I want is for just 1 doctor to diagnose me right is that too much to ask?" As I am writing and just the thought of all the issues that us people who have lupus whether it be internally or  externally it really is stressful and they tell you not to have too much stress!!! Are you kidding me???!!  Here is what I have to say about that "WHATEVER"  How are you not supposed to stress when you have all these doctor's can't give you a straight answer. I have been fighting this disease for a long time. I have heard on numerous stories of people who have had complications with lupus and as a result they passed away. My heart goes out to those people who have suffered greatly due to this relentless disease. You need to ask yourself this question. Am I in control of my disease or is the disease controlling me? If you are a the person who looks at you and says" You don't looks sick"  you turn to them and say " Walk a mile in my shoes and tell me how that works out for ya" .